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Hey all. I haven't been on here in some time. I have been dealing with chronic Pouchitis for 5 years. And take 500mg of Cipro daily. When trying to get off of it, it just comes back. Now recently a small fitsula has been discovered through an MRI, that has tunneled it's way into my vagina. Dr's now are leaning more towards that I was misdiagnosed back in 2001, and actually have Crohn's. I am getting a scope done on Monday to look at the fistula. And if it is determined that I do have Crohn's, then new treatment will need to be discussed. If meds don't work, I could be getting the bag back. I have been so up and down with my emotions since dealing with all this. If the bag is in my future, at least this time around I am healthy. Not sick like was I was back then, depleted and in such pain. And I know I will be ok. Just so sick of dealing with poop and bowel issues. Wish I had that magic wand!

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Thanks Lauren! I am trying my best to be positive and take it one day at a time. She did mention Remicade. They sent my case to a gastro specialist, and will know more what the plan is after the scope and blood work.

You are welcome my dear I know its hard to stay positive in this dark world; what I like to do to help me is that I make a list of the things that I am grateful for and that helps me be positive.

I am soo happy they mentioned Remicade!!! I hope that works for you or whatever they choose! Definitely let me know how everything goes

I developed 2 fistulas after my jpouch as well (years later), along with abscesses.  I ended up having my pouch removed and going to a bag.  The original dx. was UC, but the surgeon I switched to believed it developed (?) into perianal Crohn's.  My doctors never recommended remicade or the like, but looking back, I wish they had and I had given it a try, at least.  That being said, I'm doing very well with the bag.  Fistulas are currently gone, fingers crossed they stay gone, but apparently there's no guarantee.  It's so difficult to have one thing after another happening to you - I hope you and your doctor's can find a plan that works for you. 

@n/a posted:

I developed 2 fistulas after my jpouch as well (years later), along with abscesses.  I ended up having my pouch removed and going to a bag.  The original dx. was UC, but the surgeon I switched to believed it developed (?) into perianal Crohn's.  My doctors never recommended remicade or the like, but looking back, I wish they had and I had given it a try, at least.  That being said, I'm doing very well with the bag.  Fistulas are currently gone, fingers crossed they stay gone, but apparently there's no guarantee.  It's so difficult to have one thing after another happening to you - I hope you and your doctor's can find a plan that works for you.

I am really happy that you have a bag and are doing okay! I hear the bag gets rid of fistulas and abscesses almost instantly, glad you are doing well

I had my scope today. She does believe it is Crohns. She said the fitsula is from the anus to the vagina. She said they could try to repair it, but that could cause me to have control issues. Because I guess where it is, the skin is very thin. So my surgeon and the specialist team will be discussing what they think is my best option after going over things from today. My gutt feeling is that I will be back with an Ileostomy.

Crohn's is just a label for inflammation. I carry it as a diagnosis but have had a J Pouch for 28 years and will not be losing it any time soon and hopefully never. Instead of focusing on mere labels for inflammation, which frankly have little distinction between them in terms of the treatments actually used to treat the various labels we have for different forms of IBD, it's more productive to focus on getting proper treatment. The fact that you have a fistula is concerning, but my question to you is why are you not on biologics, and if you have not been tried on biologics, then discussion about going to an ileostomy is a vastly premature overreaction. You only mention 500 mg Cipro, which is a minor dosage for chronic pouchitis and it probably should have been combined with a dissimilar antibiotic to maximize coverage. But given your status now, biologics seems like the next step, not surgery. You should be tried on Remicade or Entyvio. Then see what happens.

Last edited by CTBarrister

I had my scope today. She does believe it is Crohns. She said the fitsula is from the anus to the vagina. She said they could try to repair it, but that could cause me to have control issues. Because I guess where it is, the skin is very thin. So my surgeon and the specialist team will be discussing what they think is my best option after going over things from today. My gutt feeling is that I will be back with an Ileostomy.

Oh wow, I am sorry to hear that honey! Sometimes in life we have a lot of trials and tribulations that we must overcome; do not ever let anything beat you. If I were you, I would get an ileostomy to end my troubles, but everything is your choice; if you do choose an ileostomy, its definitely not the end of the world. I would much rather you get an ileostomy instead of seeing you suffer like this, I am so sorry for your suffering. I think a ileostomy is the best bet.

Before my J-pouch surgery, I had a choice of biologics from the surgeon or surgery; I thought the biologics were just putting off the inevitable in my opinion, so I chose surgery and 6 years later I am doing good. Sometimes I think surgery is better than trying other medicines.

*Let me know how everything goes, keep my updated *

Sending LOVE your way!

@CTBarrister posted:

Crohn's is just a label for inflammation. I carry it as a diagnosis but have had a J Pouch for 28 years and will not be losing it any time soon and hopefully never. Instead of focusing on mere labels for inflammation, which frankly have little distinction between them in terms of the treatments actually used to treat the various labels we have for different forms of IBD, it's more productive to focus on getting proper treatment. The fact that you have a fistula is concerning, but my question to you is why are you not on biologics, and if you have not been tried on biologics, then discussion about going to an ileostomy is a vastly premature overreaction. You only mention 500 mg Cipro, which is a minor dosage for chronic pouchitis and it probably should have been combined with a dissimilar antibiotic to maximize coverage. But given your status now, biologics seems like the next step, not surgery. You should be tried on Remicade or Entyvio. Then see what happens.

My question to you is have you had to deal with chronic pouchitis? Do you have a fitsula? They did mentioned meds or biologics could be an option, or repairing the fitsula but I could have control issues because where is it is a concern. Worst case senerio is back to the bag. I am still awaiting to hear what the gastro team suggests. They are waiting on the biopsies to come back. I am all for trying meds first if that is an option. But if the end result is a bag, I am ok with that as well. As long as I am healthy and not suffering from other issues, then I will be ok.

Last edited by Mamacakes2015

As noted in my signature, I have been dealing with pouchitis/inflammation in my J Pouch since 1995. I was on antibiotics primarily for 20 years, and then Remicade the last 5 and Remicade cleared up the inflammation in the J Pouch, although not completely at and above the inlet. I was on much higher dosages of antibiotics than you are, rotated them, took them in tandem, was scoped annually, stayed on top of my treatment and mostly controlled the inflammation, which for 20 years was described to be in a "simmering state", and was fortunate not to develop any fistulas. Although I am strictured at the J Pouch inlet, if that counts for something. When slippage started, in 2015, I went on Remicade and there was immediate improvement based on the next scope 6 -7 months after Remicade treatment started.  I had been told to go on Remicade since around 2008 or so, but had stubbornly resisted it until the continual aggressive recommendations every year eventually wore down my resolve not to go on Remicade (and I had to wait for nearly 6 months to go on Remicade due to treatment for cancer, but that's another thread).  I have been a Crohn's diagnosis (tentative) for 13 years since 2007, but what you call it REALLY does not matter, because it's inflammation, and regardless what label you slap on it, you have to treat it.  And guess what? All the treatments are mostly the same for pouchitis and Crohn's Disease, so I call it inflammation and dispense with the mostly useless labels.  So it boils down to how aggressively and effective the treatment is for the inflammation/inflammatory response.

I never would have considered or even thought about surgery without exhausting the myriad biological drug options, but that is just my opinion.

Bottom line is: 28 years with J Pouch, 25 spent battling pouchitis and Crohn's Disease as I have inflammation above the pouch in the neoterminal ileum, possibly due to backsplash stool but nevertheless a tentative Crohn's diagnosis due to the inflammation pattern which is somewhat irregular.  I am strictured at the J Pouch inlet, but according to GI doc as long as he gets the scope through I do not need to be dilated.  And he has gotten the scope through every year, although back in 2012 almost could not, and if you look at my scope pics you will see why- just wasn't being well controlled through treatment and diet. (Lauren recently noted my scope pics from 2012 which are posted in another thread and that was probably the low point in my treatment, but I changed my diet after that to dramatically reduce carbs and sugars with noticeable improvement and weight loss).

Last edited by CTBarrister

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